Life or Death: What really matters?

Humanity is obsessed with death.  Various religions provide different theories on what will happen after a person dies, people play games or go to fortune tellers that speculate when and how they will die, and people make plans for the end of life and what will happen with our loved ones after we die.  A few people even learned to profit from our obsession with death charging people money for coffins, urns, and funeral services.  Television show after television show presents the question of whether a person would want to know when and how he or she will die.  However, when we talk about death, we often discuss it in relation to the death of other people rather than our own deaths.

In a way, death controls our lives; however, we somehow find a way to overlook death and forget about it throughout most of our daily activities.  While death is on the backburner for many people within society, people with disabilities often have death forced to the forefront.  Whether individuals with disabilities like it or not, their families, their friends, and their doctors tend to focus on the death of the individual with a disability rather than the life of the individual.  There is an assumption that individuals with certain disabilities will die young, and their deaths become more important than their lives.

In Harriet McBride Johnson’s book, she discusses how her death was a focus from the beginning.  Some of her first memories include realizing that she was sick, that she was different, and that she would die much sooner than other children her age.  For many individuals with various disabilities, the first question that family and friends ask after the disability is discovered is whether the disability will affect the person’s life span.  It seems almost like, for a person with a disability, when he or she will die is more important than the life the person will live.

The expectation of life or the expectation of death becomes a self-fulfilling prophecy.  For example, Harriet McBride Johnson discussed how when she contracted pneumonia, she received much needed care from other people, but she also wondered how many other individuals with disabilities died because they didn’t receive the same standard of care because those who would have been providing the care expected the individual to die.  The expectation of death is not only acknowledged by the person with the disability but can also determine whether that person continues to live.  Harriet McBride Johnson discussed the fear that she had when she first realized that she might outlive her parents (that she might live long enough to feel the pain of losing a person she loves).  Realistically, this is a problem that every person has to face.  We do not know when we will die, and we do not know when the people we love will die.  Therefore, nobody knows when he or she will experience loss.  However, we often refuse to face it.  We refuse to think about those thoughts that we know will make us sad and depressed.  Instead, we tend to avoid the subject or when confronted with the subject of death, talk about it in terms of other people rather than ourselves and our loved ones. 

However, when it comes to individuals with disabilities, many people force the individual with the disability to talk about death.  Those with a “terminal disease” are often encouraged to enter therapy to talk about their deaths.  If we are all going to die, then why should only those people with disabilities be forced to confront the thought of death?  If we acknowledge that there is no way to know exactly when and how any person will die, then why do we force individuals with disabilities to think about the time and the manner in which they will die?  If we wouldn’t  want others to force us to confront our own immortality, then why do we force individuals with disabilities to do that?  I fear that by forcing individuals with disabilities to think about their deaths when many other people do not, we are sending the message that the lives of individuals with disabilities are not what matters, but rather the deaths are.